A major obstacle that hinders medical and social research is the lack of data availability due to privacy concerns. A lack of procedures for protecting confidentiality still precludes data collection. This contributes to the lack of trust by potential subjects for providing confidential information.
For example, some people refuse to participate in research because they do not have enough trust in the confidentiality protection or are reluctant to confide secrets to strangers. In some cases, people may consent to research but purposely provide wrong information for those same reasons. The resulting error (or bias) in medical and social research from including the purposeful and intentional wrong information provided by a subject is referred to as evasive answer bias. Refusal bias may arise where a population of interest refuses to participate in the research, resulting in research not relevant to that population or skewed to the population of responders. In both cases (evasive answer bias and refusal bias), the results of medical and social research can be difficult to interpret and apply.
Even when people agree to participate and provide truthful confidential information, protecting confidentiality remains a challenging issue (American Association of Medical Colleges, 2010). The Health Insurance Portability and Accountability Act of 1996 (HIPAA) and subsequent rulings have spurred the implementation of a number of privacy protection procedures limiting access to confidential information. One of such procedures involves a review by an Institutional Review Board (IRB) that must approve release of medical records from a hospital. To facilitate data sharing, a number of technologies have been developed for masking data at the time of release. However, the current data masking approaches do not yet justify bypassing the bureaucratic IRB process because the private information is collected and accessed by investigators before the data masking occurs (and therefore requires the attention and review by the IRB). The IRB review process can take a significant amount of time and even when the IRB approves the release of data, the use of this data is subject to stringent restrictions.